MS like symptons, no positive diagnosis - what next?

[2kidsmom]

See your prev answer to me(Aug)"what should i do now?"...  HISTORY: Scale(1-best 10-worst)CONSTANT:dizziness(10),light headedness(10),weakness in limbs(9),fatigue(7),incoordination(9)(e.g. feel like going to fall),short term memory(6),inability to focus(7), ringing ears(9).SOMETIMES:numbness in left arm(5),tingling (pins/needles) in limbs(5). Symptoms have been increasing over time(years)-coming ang going,now mostly constant and seem to increase after being in heat (e.g. shower, etc). TESTS: MRI(normal),EMG(normal),BAER/Visual(VER)(normal),bloodwork(normal). DIAGNOSIS:Rhumatol.. ruled out Chronic fatigue, fybromalgia,Lymes,etc. Neurologist wants a Spinal Tap next. Plan to get 2nd opinion in Jan from U of Penn (no insur 'til then) NOW WHAT? What else (other than MS) could it be?The only thing not ruled out is MS, despite normal testing.  I've read, even the spinal could be normal & still be MS.  If so(normal spinal), what should i do next?  Doctors seem stumped.  Can they treat me for MS without postive diagnosis and see if I respond?  They are not giving me/doing anything to make me feel better.  No diagnosis either.  If normal spinal tap - what next? I cannot care for my 2 small children w/o assistant from family-Thank You for taking the time to help others that are going through difficult times...your words and knowledge are comforting.

[marisa]

I have been experiencing a rather strange symptom for over a year. I feel as though I am walking on a 'floating dock' for lack of a better description. This is accompanied by random dizziness, fatigue and a sensation of heaviness in my feet. Has anyone else had the 'floating ' sensation when they walk? I have had an MRI, CT, and also seen a neurologist. Every test was normal. Something has to be causing these symptoms. Thanks for sharing and caring.

[Korie]

Thank you for your response.  It seems so wierd that most of the diseases that are associated in the brain are so hard to diagnose and that it can take years before an exact anwer is given.

I hate feeling the way I do...I have taken notes from your comments as well as reading other peoples issues.  I did look up the names that you listed previously, however, some symptoms sound like me and others don't.  I just hate feeling so strange sometimes and I have yet to see anyone out there who has listed. Acephalgic Migraine.  Or been given any sort of migraine diagnosis.

I am definately considering the 3rd opinion for follow up to all of this medical stuff.  However, when I asked my current neuro for a follow up MRI, seeing that I have not had one in almost 1 1/2 years, he stated he did not see the necessity for it.  No major changes in any symptom....I felt that kinda of odd, since I am still suffering breakthru the meds and have yet to live the life I once used to....Any way I am not the Doc..But I definately am going to bring up some of what I have read to him and see if there is yet anything more I can do.

Thanks again for responding and I hope that your medical condition is getting better and under control as well.

[t_anunson]

Hi Annika,

Thanks so much for answering me so quick. I was wondering? How do u know so much about this stuff? U a nurse, doctor? Just curious... I`m just a civilian, and I`ve learned a lot on this stuff too from just researching. thanks...

[Annika]

Dear TabA,

A popping/cracking sensation is usually caused by bone against bone, or sometimes by tendon/ligament against bone.  It's very nonspecific, meaning it doesn't tell you much about the exact cause, but it does tell you that when the joints of your cervical spine are moving during daily life, something is not gliding as easily as it should.  Depending on where the cracking/popping is, it could be other parts of the musculoskeletal system of the neck too, but since the spine makes up almost all the joints in the neck, this is usually where the problem is.

This could be totally incidental to the other things that are going.  It also could be related.  The most common cause of bone cracking/crunching is probably minor orthopedic abnormalities in the cervical spine - such as the changes of osteoarthritis, bone spurs, imbalanced ligaments (that aren't holding the cervical spine aligned the way it should be).  Most of them are no big deal.  Calcifications in the soft tissues around the neck (from old trauma, say) can also do this.  

One of the rarer causes of this problem is what I have: weakness of the neck muscles themselves (due to nerve damage), causing the whole structure to lose it's natural strong support during movement.  I have a lot of crunching and snapping in the neck, and it happened very suddenly (at the same time that the nerve damage to the neck happened).  But I have to stress that this is such a rare cause - almost always, the kind of popping/snapping you describe is due to wear-and-tear related changes in the bones and/or ligaments.

Your symptoms do make me wonder again about the possibility that a cervical disk prolapse is causing some of the numbness/tingling you describe.  It would seem weird to me that you would have more symptoms in your legs than in the upper body, if a disk in this area were at fault.  But I've given up trying to predict the nervous system, and it's very hard to tell what the full picture is by e-mail anyway.  There are things in the cervical spine that can show up with leg symptoms before the real arm symptoms begin.  A cervical MRI seems reasonable, at least as reasonable as the brain MRi (which they've already done).

Good luck,
Annika

[Annika]

Dear Korie,

I re-read the details of your story, as well as your other post.  While it's impossible to really get a sense of what's happening on-line, there are many parts of your symptoms that are the same as those that might happen if there were problems affecting the brainstem and cerebellum.  These two structures are the ones that are primarily affected in a Chiari malformation.  As I mentioned to 2kidsmom above, and which nikibug has also discussed, a Chiari can be tricky to diagnose.  The MRI's really need to be reiviewed by someone who has experience with the newer classifications of Chiari anomalies.  A Chiari can also cause intermittent hydrocephalus.  

The people who tend to understand Chiaris are often neurosurgeons, because they see these patients the most. However, different surgeons' experience levels may vary widely.  To really rule out this diagnosis in a patient who has symptoms that might be suggestive of a Chiari (and I wouldn't know if yours are - so many things become ambiguous when described in e-mail), it may be necessary to meet with a neurosurgeon who specializes in Chiari anomalies.  I know that at Johns Hopkins, their neurosurgery department has been involved in some of the recent research on these disorders.  For someone who is seeking evaluation, one might check out the web-pages of different neurosurgical centers, and see who lists this as a specific area of interest.  You can start by raising this issue with the neurologist you are already seeing.

One key feature of a Chiari is that the symptoms are often affected by triggers that raise the pressure inside the head (like straining, vomiting), and by the positions of the head or neck (bending the head/neck forward, in particular, tends to bring on symptoms).  But it can be somewhat fuzzy.  Patients often have headache, especially at the base of the skull/nape of the neck, neck pain, choking sensations, trouble/changes with breathing, changes with hearing, feeling of pressure behind the ears, incoordination, feeling of pressure behind the eyes, blurred vision, ringing in the ears, pain/numbness/weakness down the neck/arms, facial pain/numbness, changes in the voice (hoarseness or clumsiness when speaking), difficulty/straining when swallowing, chronic fatigue, plus all the symptoms of intermittent hydrocephalus that can happen along with this syndrome.  There are other symptoms which I am likely forgetting, because there are many ways this syndrome can present.  Patients do not always have all the symptoms, and symptoms may range from mild to severe.  

The basic abnormality in a Chiari is that the brainstem/cerebellum is located too far down into the opening in the skull where the spinal cord leaves the brain.  This can cause changes in CSF flow through this area, or direct pressure on the brainstem/cerebellum.  All the symptoms follow from these basic problems.

So Korie, the main reason why I am writing this up for you is so you can get a sense whether this in any way relates to your problems, or if it's totally out in left field (it might be).  I'm speaking only as another patient and don't mean to try to diagnose you.  I just understand that you've been struggling for some time with symptoms that aren't exactly no big deal.  If I were in your place, I know I would be looking for information.  I know there are many other things that might be going on.

Good luck,
Annika

[t_anunson]

Hi, I`ve been having a buzzing sensation shoot down my right leg when I bend my head down. I had a brain MRI- normal. Have had peripheral neuropathy symptoms on and off 4 months after daughter`s birth. Also spasticity in limbs. I`m scared I could have MS. Going to doctor tommorrow for neck MRI results... I`ve also had a popping/ cracking sensation in my neck 2 yrs. I`m wondering if this buzzing sensation could be a lhermittes sign.. any advice from anyone?